Could I Have Been a Better Friend at the End?

Maybe discretion is part of friendship. Maybe it isn’t always necessary to tell the whole naked awful truth (I think you’re dying); but I have to face the possibility that acknowledging the awful truth might have allowed me to be a better friend to her.

My friend Penny died on Sunday.

Her death didn’t surprise me, and yet it is unbelievable, and yet it is true. Diagnosed with lupus more than 20 years ago, Penny began to lose physical ground about three years ago. She’d lost ground before, but she’d regained it, more or less—initially more, but recently less.

In a way, I met Penny because of lupus. She’d enrolled in a writing workshop at the art school I was running, and she called to ask about classroom space. When I told her the class would be held in the un-air-conditioned breakfast room of a B&B, she immediately offered her house instead—and so for a week that summer, a dozen students gathered around the table in her blissfully air-conditioned dining room. Her need for air-conditioned space was exactly that: a physical need. Heat could bring on a lupus flare.

Lupus is a chronic autoimmune disease that causes inflammation in the body’s organs and joints. A flare means you are symptomatic—and as the years went by, Penny’s symptoms grew in number and intensity, and the flares became a blur, one after another, piling on and leaving her in continuous pain.

As her health declined, she’d tell me about a new symptom or an additional diagnosis, and I got in the habit of Google-ing information, checking multiple sources, and then offering her the condensed version, glossing over worst-case outcomes. There was no point in dwelling on them; she knew what they were. I tried to distill information the way Penny herself had done it when she’d felt well enough, focusing on treatment options and questions she might ask her doctors.

Until about three years ago—around the same time the ground tilted beneath her and she couldn’t regain her footing—Penny traveled every year from her home in Berkeley to her home in Taos, the same house where the workshop had met. She’d spend several weeks in Taos, and we’d have lunch and coffee, and she’d attend a meeting of No Coast Writers, our read-and-critique group. She always timed her trips to make sure they’d coincide with a meeting. She was working on a memoir about her relationship with her mother; her writing was honest, incisive, and funny. Once, after a trip to Italy, she read a travel essay she’d written. Travel was difficult for her but still possible, and she managed the challenges of the Italian trip so well that the rest of us in the group envisioned her writing an entire series of articles—maybe even a guidebook—about traveling with disabilities.

The altitude in Taos proved to be too hard on her, resulting in multiple trips to the ER and prolonged hospital stays. Her last trip to Taos coincided with a No Coast meeting, but she’d stopped reading at the meetings because she wasn’t writing. The combination of not feeling well and a confusing rainbow of pills and tablets and capsules, all prescribed, all necessary, left her unable to focus long enough to write—and eventually, unable to focus long enough to read more than a page or two.

Prednisone was the cornerstone of the pharmacopeia. Nothing else reduced the inflammation. She disliked taking it, but without it the pain was so intense that she couldn’t function. We think we can power through pain, ignore it—and sometimes, when it’s temporary or minor, we can. But extreme chronic pain is transformative. It’s like winding razor wire around your body and then setting yourself on fire and continuing to bleed and burn hour after hour, day after day—and you will do anything to make it stop.

Years of taking Prednisone—with higher doses during a flare—caused the wall of her colon to thin so drastically that it perforated. The colostomy, she told me, was temporary; it would be reversed when she was well enough for surgery. She needed rotator cuff surgery, too, but orthopedic concerns were secondary.

Two years ago I visited her in Berkeley. I’d offered to come out the next time she was having a procedure done, when she would need extra (albeit untrained) hands—but what she really needed help with, she told me, was insurance paperwork.

During the five days I was there, I spent perhaps three or four hours sorting and organizing bills and estimates of benefits, but I never got down to the work of figuring out who owed how much to whom because Penny’s health was precarious while I was there. She’d been released from an unexpected hospitalization the day I arrived—and the day before I left, we checked her into the hospital again, bookending a trip that had been filled with doctors’ appointments and lab work. Being this ill is work, and Penny was physically and psychologically exhausted. Through her exhaustion, I saw her fear.

And that’s when I knew my friend was going to die.

A year ago, I dreamed that her house in Berkeley was connected to my house in Taos by a secret stairway that I could go through at will; in my dream, we were having a lively, animated conversation, and we were laughing—just as we always did in person. She loved that I’d dreamed this. I didn’t tell her that in the dream, she’d been in bed—ill.

Obviously none of us will get out of this world alive, but my friend was sliding down the side of the mountain, and she was losing her ability to arrest her descent. The doctors could slow the slide—sometimes, for a little while—but that was all. She would never gain altitude again.

I understood this, but I denied it because her death was so much a thing I did not want to happen. I tried to react with equanimity when she told me a few weeks ago that she’d had “the talk” with her daughter about hard decisions that might have to be made eventually. Eventually, I thought. Not now.

Not happy you had to have the talk about future hard choices, I wrote to her in an email, but I’m looking at it as taking care of business; doesn’t mean anything dire is in the offing, just that should dire events transpire, forethought equals preparation, and it’s always good to be prepared.

That was the modus operandi of our friendship. I was so determined that she would not die that I failed her in a significant way at the end of her life. I didn’t want to know she was at the end, even though I’m sure both of us knew. But I refused to acknowledge it. My reaction was the equivalent of wearing a blindfold and earplugs; events were playing out whether I acknowledged them or not.

A month ago, I sent her a mutual friend’s newly published book, which she was too exhausted and unfocused to read—and a three-pack of OPI nail polish, our favorite brand. The unwritten, unspoken message: You’re not dying. You’ll go through all three bottles of this nail polish that we love, and then I’ll send you some more.

It had worked for Scheherazade, spinning a story a night for 1001 nights.

It did not work for Penny.

It did not work for me.

A year ago, I dreamed that her house in Berkeley was connected to my house in Taos by a secret stairway that I could go through at will; in my dream, we were having a lively, animated conversation, and we were laughing—just as we always did in person. She loved that I’d dreamed this. I didn’t tell her that in the dream, she’d been in bed—ill.

Maybe discretion is part of friendship. Maybe it isn’t always necessary to tell the whole naked awful truth (I think you’re dying); but I have to face the possibility that acknowledging the awful truth might have allowed me to be a better friend to her.

When I wrote to her about my anxiety over attending a writing conference earlier this month, she wrote back, I know what you mean, but take a chance. I did twelve years ago, and I met you.

I could have been a better friend. I hope I was good enough. I think maybe Penny thought I was—and that’s good enough for me.

Susan Mihalic is a writer and editor based in Taos, New Mexico. She has taught writing and produced dozens of writing workshops. She specializes in New Adult fiction. Follow her on Facebook.com/susan.mihalic or on Twitter @susanmihalic.